People living with chronic illness already know that the triple whammy of ongoing physical symptoms, psychological distress and the discomfort of medical procedures can cause us to suffer. But when California sociologist Dr. Kathy Charmazstudied chronic illness, she identified an element of suffering that is often dismissed by health care providers.(1)

As she explained in research published in the journal Sociology of Health & Illness, a narrow medicalized view of sufferingthat’s defined as physical symptoms only ignores or minimizes the broader significance of suffering in a way that may resonate with you if you too live with a chronic illness like heart disease:

“A fundamental form of that suffering is the loss of self in chronically ill persons who observe their former self-images crumbling away without the simultaneous development of equally valued new ones.

“The experiences and meanings upon which these ill persons had built former positive self-images are no longer available to them.”

I don’t know about you, my heart sisters, but I felt profoundly moved when I first read those words about “the loss of self”. Dr. Charmaz, also the author of the book Good Days, Bad Days: The Self and Chronic Illness in Time, captured in her study’s conclusion precisely what I’ve been feeling and trying to write about since my own heart attack in 2008.

This loss of self she describes can start early – sometimes even before a diagnosis is made – and continues to grow insidiously from there.

For example:

Pre-diagnosis: Physicians can discredit our own definitions of self when we’re seeking help for early troubling symptoms (e.g. when we try to convince a dismissive doctor: “I know my body, and something is just not right!”) Dr. Charmaz warns that physicians sometimes treat undiagnosed persons “asneurotics whose symptoms are either nonexistent or psychosomatic in origin, leaving the patients feeling unsupported or guilty of having brought their discomfort upon themselves.” See also: Heart Attack Misdiagnosis in Women

Beginning of illness:“Generally, ill persons report that family and friends may readily demonstrate their interest, attentiveness and assistance when illness begins, but as time goes by such involvement tends to dwindle to only few members of the immediate family.”See also: Living With Heart Disease – and Your Whole Family

Worry about burdening others:Although some married women in the study reported that their husbands were “exceedingly helpful, supportive and protective”, several married women expressed fear of greater impairment since their husbands “did not like sick people”. See also: Women Heart Attack Survivors Know Their Place

Unpredictability: The nature of living with a chronic illness means sometimes we just can’t predict when we might have a ‘good day’ or a ‘bad day’ – or even intermittent ‘bad spells’ during any given day. “Due to their unpredictable conditions, these patients suffer disruptions of their lives and selves that go far beyondphysical discomfort. Such disruptions may include thenecessity of quitting work, limiting social engagements, or avoiding activity.” See also: How Social Isolation is Hurting Your Heart

Limitation of life: When people are forced into limiting normal activities to protect their health, adds Dr. Charmaz, they may do so at great costs to one’s self-image. “Most importantly, living a restricted life can foster an all-consuming retreat into illness.” See also: The New Country Called Heart Disease

Work: Some chronically ill people feel well enough to continue working, while others are no longer able to work – but coping with either decision can affect our sense of self, as Dr. Charmaz explains: “When fortunate enough to work, ill persons frequently feel they have to restrict all other activities in order to manage the demands of their jobs. But when forced to leave work, they may be reduced to living marginally, leaving their prior social worlds entirely.” See also: How Working – And Not Working – Affects Heart Disease

All-consuming focus: Serious illness can flood identity. The seriously ill person may have essentially lost the ability to minimize his or her physical condition, explains Dr. Charmaz. “Their illnesses become the focus of their lives as treatment regimens, living with constantdiscomfort, medical appointments, and the problematics of mundane activities structure and fill their days.” See also: How Ruminating Hurts Your Heart

The world is set up for the healthy and able, she adds – a fact the ill and disabled usually do not question. She believes that this reality may help to explain why the patients she studied (living with a range of chronic illnesses including cardiovascular disease, diabetes, cancer, multiple sclerosis or lupus) so often judge themselves by yardsticks more appropriately applied to the healthy and able.

One of the most useful parts of this study is the expansion of the word “suffering” to include a loss of self. As Dr. Charmaz defines it:

“The language of suffering thesedebilitated people spoke was a language of loss. They seldom talked of gaining a heightened consciousness of the world, revelations about self or insights into human nature from their experiences. Instead in their suffering, they experienced the heightened self-concern described above.”

But wait . . .

Lest you interrupt at about this point to mention ________ (insert name of any celebrity patient who has “battled” a devastating health crisis and emerged a happier, stronger, far more heroic version of their former selves), Dr. Charmaz is careful to point out the key differences.

On one hand, you have those who are still living with the debilitating daily reality of chronic illness. These are not the same at all as those who at one time in the past may have had an episode of serious illness – but then got better:

“For (the latter group), such periods of serious illness became the foundation for re-evaluation and change of self.

“These individuals spoke of earlier crises as periods of time when they were free from the ordinary bonds of routine existence. That freedom heightened their consciousness of who they were and who they wished to become.

“For these people, illness became a tool of self-discovery and a fundamental source of later self-development.

“But those who were currentlyseriously debilitated and still in the throes of multiple health crises, were much less positive about their experience of illness.”

All is not necessarily bleak, however, for all those living with chronic illness. For example, retaining the ability to make personal choices (no matter how small) goes a long way in rebuilding that sense of self. I was particularly struck by this observation about the power of choice from Dr. Charmaz:

“As long as an individual feels that he or she exercises choice in valued activitiesand some freedom of action to pursue these choices, everyday life does not seem so restrictive, suffering is reduced, and self-images are maintained.”

This really helps to explain why I love doing my women’s heart health presentations so much. These have been described as “part cardiology bootcamp – and part stand-up comedy!”

Since my own heart attack, I’ve spoken to thousands of women – and quite a few men! – about the important subject of women’s heart health. Yet each talk takes a heavy personal toll, sucking every shred of energy I can muster. I’m utterly drained by the time I step off the stage, and more importantly, I need at least one full day afterwards immobilized on the couch just to recover. But I love every single minute while I’m up there, so to me it’s worth the price – for now, or as long as I’m able to continue.

It would certainly be easier and less painful for me to avoid this exhaustion by not booking any talks in the first place – but I choose to continue doing them. For that time when I’m onstage, as Dr. Charmaz would say, I get to see glimpses of my old pre-diagnosis self. I can feel even briefly like a smart and competent and “normal” person once again. This means a lot to me given that so much of life with ongoing and debilitating cardiac issues no longer feels “normal” at all.

Or as Dr. Charmaz would define it, although much of my former self-image has “crumbled” away, I’m now trying to manage this “simultaneous development of an equally valued new one.”

When a friend’s niece (a busy, active, accomplished healthcare professional) was diagnosed with terminal brain cancer last year, she shocked her family and friends by planning a big family trip to Europe before she died. Why, they worried, would she want to put herself through all that stress (far from safety, familiar surroundings and her medical team) instead of staying home and resting? Perhaps, as Dr. Charmaz’s study suggests, it was important to her to keep making those “choices in valued activities” for as long as she could.

The newly emerging self-image is probably unlikely to be better, or even as good as, the old version. And remember that the old version, thanks to the rosy glow of idealism, can loom larger and more *perfect* with each passing day compared to our current reality.

It may not matter. For now, I know that even a small step forward keeps me from staying stuck in regret, resentment and the utter futility of wishing that what happened had never happened.

15 Responses to “The “loss of self” in chronic illness is what really hurts”

Thank you for reposting this. I think this was before I started following your wonderful blog, but what you say here is so true. Great thoughts as usual, Carolyn! Also, best wishes with your new writing project. Excited for you!

Thanks for your kind words, Nikki! I love what Dr. Charmaz has written about this ‘loss of self’ concept – her work rang so true for me, too. Every once in a while, I come across a researcher who somehow speaks to me just as if she’s already taken up residence in my own brain! We’re in countdown mode to my book’s launch this fall (just finished all the copy edits and am now awaiting page proofs – very exciting stuff!)

Thank you for the article. I have been trying so hard to live my pre-heart attack life, determined to not let it diminish my lifestyle/work and activities. I have just recently gone on temporary disability at the urging of my loved ones. I now understand that I am not able to perform my job duties/activities as I had prior to heart disease.

I am really doing a lot of soul searching. Yes, I want my old self back, but it is time to be realistic and move forward and do what I CAN do. I still want life in my years, it will just be different.

Wow. Michelle, I felt like I could have been reading my own words when I read your comments – thanks so much for sharing them here. I too had to be forced to apply for extended medical leave because it was crushingly obvious to me (and unfortunately, to all of my colleagues) that I could no longer function during my return-to-work trial, not even half-days. I was devastated. Like you, I was desperate to get my old life back. You are so right – life WILL be different, but over time I hope you’ll come to a place where you will appreciate the “life in your years”. Best of luck to you…

Hi Carolyn,
Such an interesting topic. I think I commented on the original version too. This topic seems to always grab my attention! I agree, the world is set up for the healthy. This creates problems. How could it not?

Even with the natural aging process, problems result from this “set up” for everyone eventually. When a person has a chronic illness, it’s certainly an ongoing thing, this struggle to regain a sense of your lost self. I would say it’s the same for me too, and many other cancer patients I know.

The point made about an illness event being a tool for self-discovery really strikes me, since as you know, I have had a cancer diagnosis. As you also know, I do not find that I had some amazing enlightenment experience as a result of my cancer diagnosis. That whole ‘illness as a tool for self-discovery’ concept just rubs me the wrong way. It seems to be one more way to re-frame illness as a gift and I realize some people do view their illnesses that way, but as for me, no way.

I still feel that loss of self every day. So why do I keep blogging and talking about cancer so much? Probably for the same reasons you keep giving your talks. Sorry to ramble. Thanks for the post.

Hi Nancy – thanks very much (again!) for weighing in here. Just for fun, here’s your (very good) comment from last year when I first ran this post about Dr. Charmaz’s research:

“The loss of self is very real and I don’t think this sense of loss necessarily ends when treatment stops or after a certain amount of time has passed. I am still trying to reclaim my ‘old self’ in so many ways and at the same time move forward by accepting who, what and where I am now. There is so much collateral damage that goes along with breast cancer treatment. I am still trying to put the pieces back together and I work daily at not comparing the old me with the new me. There are days when I still feel as if I fell through a trap door.”

You’re so right – and it’s not just about illness, no matter what the diagnosis. And this post has been shared a lot on Twitter since it ran yesterday morning, including by some sports docs who say that this “loss of self” crisis also applies to elite athletes (like the ones we’ve just watched at the Rio Olympics). You can imagine how this applies if you’re an Olympian who has spent years building a self-image focused only on continuing to excel in your specific sport – and then suddenly it’s all over (due to injury or retirement or inability to maintain your peak performances any longer). Talk about a loss of self – while trying to seek the “simultaneous development of equally valued new one”.

Re: why do you and I continue to write/speak about our health crises? Some academics like Dr. Al Sieben theorize that it’s due to one of two main reasons, for example: “…they talk or write about the trauma in a way that is helpful to others”. I like that!

Important topic that affects my heart itself as I work my way through the emotional side of 4 years of chronic, hard-to-manage heart stuff. Great timing, I have just started a concerted work-through of these feelings with my coach and I see so far:
– both parents used illness to manage stress (will be good to get that out of the picture)
– I can practice how it would feel to be centered and balanced even here
– and I see that I’ve got to go deeper for my self-worth.

It’s no longer about what I do, but who I am. This is so hard. And being kind and compassionate to myself without going into victimhood or fear is worthy work.

Thank you for sharing your unique perspective, Lian. You’re right – it IS worthy work. I especially love your second point (“practicing how it would feel…”). Similarly, I have found the “act as if…” reminder very useful over the years. Self-compassion is the key – more on that subject here! Best of luck to you…

That’s a huge wakeup, Sharen! Thank you for that. Your words remind me of something I mention briefly in this post (doing my public presentations on women’s heart health). In the early days immediately post-Mayo training, I said YES to every speaking invitation, even evening talks that would mean I’d be lugging my big boxes of Red Bag handouts in and out of the car, and forcing myself to stand for hours despite feeling dead-tired. One horrible evening, I had a major meltdown during a jam-packed talk and cried all the way home. A dear and brutally honest friend asked me later that week: “You hate doing talks in the evening when you’re exhausted and sick. What are you trying to prove?” That was a turning point. What WAS I trying to prove?

Like you, I think my (unconscious) goal was to prove that I could still do it, that I was still valuable. Those days are gone – I do ONLY daytime presentations now. Even when I’m invited to speak at conferences, I now answer ‘only if my talk can be scheduled for the morning’. It’s way better for me – and for my audiences – now.

♥ For women living with heart disease, from the unique perspective of CAROLYN THOMAS, a Mayo Clinic-trained women's health advocate, heart attack survivor, blogger, author, speaker here on the west coast of Canada

♥ Information for the general public, heart patients or their family members, health professionals, and all students of the heart

the presentations

♥ Learn more about my recent and upcoming presentations – including my annual HEART SMART WOMEN presentationin Victoria, BC Canada on Tuesday, February 26th! Free admission, open to all, but pre-registration is required (this class is always full with a waiting list). ♥

the news

♥ The first WomenHeart Support Group program in Canada is being held at Royal Jubilee Hospital in Victoria, BC on the third Wednesday evening of each month. Any woman living with heart disease is invited to attend. For more info, email Rose at: rlopetrone (at) shaw (dot) ca

♥Free Virtual Support Groups offered by WomenHeart: The National Coalition for Women With Heart Disease, scheduled throughout each month on three specific topics: Heart Failure, Atrial Fibrillation or General Heart Disease in Women. Check the current schedule to sign up.